A son’s gift

Born in Lake Charles, La., Luke Esters’ life was fated to be forever ensnared in the web of a debilitating genetic disorder known as CHARGE Syndrome.

He would spend his first eight months at Oschner Children’s Hospital in New Orleans where, father Randy Esters said, he underwent multiple heart surgeries, a tracheotomy, a feeding tube and other surgeries that became too numerous to count in a battle for survival.

I’d never heard of this affliction before I met Luke last year. CHARGE is an abbreviation for six specific problems that include coloboma, heart defects, atresia choanae (also known as choanal atresia), growth retardation and genital and ear abnormalities. Of those six, Luke escaped only coloboma, which causes a hole in one of the structures of the eye, like the iris or pupil.

Randy, the president of North Arkansas College in Harrison, described details of his son’s 33 years of coping with medical ordeals.

For Luke, who is learning disabled and functions at the level of a 6-yearold while reading and writing at about the first-grade level, the physical consequences also included a malformed skull that left his jaws misaligned. That malady meant he was fed through a stomach tube until he was 7.

Despite his cognitive challenges, Luke has a remarkable memory; he never forgets people he meets and can recall details about situations even years later.

Both of his ears are severely malformed, which required multiple failed surgeries aimed at enabling his ears to hold hearing aids. Today Luke remains profoundly deaf in one ear and severely hard of hearing in the other, according to his father. A powerful hearing aid provides only minimal sound.

“The combination of hearing loss and jaw malformation causes his speech to be unintelligible to most people,” said Randy. “We’ve learned to understand him through a combination of verbalizations and sign language. He has a special way of communicating with the world without using words.”

The “G” in CHARGE stands for genital and/or urinary defects, which Luke has. Because of his resulting low testosterone level, he appears much younger than his age. “He looks to be in his teens,” said Randy. “I call him my Peter Pan. He gets older but never ages.”

Luke lives in Harrison with parents Randy and LaNell and is the oldest of five siblings. For the six other members of his family, Luke brings a sense of color, creativity and the beauty of his sincere affection, as well as to anyone he meets. He adores his siblings, and they return the affection.

My initial encounter with Luke went like this: Me: “Hi, Luke.” Him: “Hi!” as he reached for a hug and pulled me close, flashing an ear-toear grin.

Luke, you see, quite literally loves everyone he meets. There are no strangers in his world where hugs are his natural way of expressing all that overflowing affection.

His favorite food is Spaghettios. His preference for TV programs varies with the seasons from It’s the Great Pumpkin, Charlie Brown at Halloween to Rudolph at Christmas, Rio Lobo and Bugs Bunny cartoons. And given his choice of something to do, Luke wants to “go on a trip—to anywhere. Walmart, Louisiana, Mars … he just wants to go,” said Randy.

Those who’ve called Randy and his wife “special people” for their devotion to their son have no idea of the wealth of goodness he brings into their family’s lives, he added.

“If they only knew how his struggles have taught us to smile through the rough times and how going to the beach or riding the tractor are his most important events of the month, or that having no sense of rhythm doesn’t stop him from dancing anytime the music plays.”

“It’s just how he is. He knows he’s loved. He knows he is accepted. He loves people and they love him back. His biggest responsibility in life is to be happy.”

Esters said he and LaNell have learned so much from Luke that they consider themselves the lucky ones to have been given a son so pure of heart, despite the challenges of having a profoundly special-needs child.

“But we never lose sight of the fact that God purposely and intentionally gave this child to us. My wife and I have often talked about Luke’s amazing effect on people who always—and I mean always—smile when he greets them with exaggerated enthusiasm,” said Randy.

Luke has spent his life in a state of perpetual wonder over even the smallest of things, which has prompted his family also to not take anything for granted. “If people only knew how singing ‘Happy Birthday’ to someone thrills him, they wouldn’t mind birthdays so much.

“I can’t imagine life without him,” he continued. “I wouldn’t be as driven as I am, for sure. He teaches me so many things about humility, gratitude, communication and purity that normal people can never learn.”

Luke’s story calls to mind Antoine de St.-Exupery’s Little Prince who assured us, “It’s only in the heart that one can see rightly; what is essential is invisible to the eye.”

Now go out into the world and treat everyone you meet exactly like you want them to treat you.